Returning to the forum, need advice for worst flare in years.

Sorry to hear about that but glad that you are trying new treatment and hope things get better soon.

Here are a few tips with the Salofalk enemas, assuming you have the accordion squeeze bottle type.

- Try to clear out / go to the toilet before you start
- Warm the bottle up a little bit before use so it's more comfortable temperature (just put it under your armpit or in some warm water for a couple of minutes)
- Shake bottle well
- Get all the air out of the bottle by holding it upright, tapping it and squeezing the air out gently, like a nurse with a syringe ... you want to avoid injecting air into the bowel as it will make it more uncomfortable
- Lubricate the nozzle and your anus
- Lie on your left side with your left leg outstretched and your right leg bent
- Insert the nozzle into the anus and allow yourself to relax for a few seconds
- Slowly squeeze in the liquid, slow and steady, over the course of a couple of minutes. Make sure you get it all in which seems to entail some intense squeezing at the end
- Leave the nozzle where it is for about 30 seconds to a minute, then remove it slowly and gently
- Lie in the same position you are in for 30 minutes before beginning to move - ideally, just fall asleep
- Keep in the enema as long as you can, the goal is to keep it in all night but any amount of time can have therapeutic effect

If you're flaring these enemas can be quite uncomfortable, just hold it in as long as you can and if the inflammation goes down over time then it should become easier to retain

oolyooly said...
Ah thanks so much for the detailed advice!

I think my main concern is keeping it in. I struggle to lie on my side without immediately triggering a toilet trip so perhaps ill chill on my back as long as possible and see how i fare.

Also is there a definitive amount of time it needs to be in there before its fully absorbed? Is half an hour the benchmark to shoot for?

No worries. Well...to begin with you might struggle keeping it in anyway, so it's good to do it on a protective mat or something ... some suggest doing it in the bathroom to begin with so you're close to the toilet. It's good to fight the urge as long as you can, enemas can make you feel like you need the toilet when you don't, and if you ignore it the urge can go away after a few minutes. Don't want to have an accident though if you can avoid it. But on top of that, if you're flaring and going to the toilet a lot or with a lot of wind, you might feel very uncomfortable and genuinely might need to go. Again do you best holding it in but there's gonna be no way to stop an urgent stool obviously. Just see how long you can manage, a few minutes is good to begin with if you can do that, you can build it up from there.

As for lying down, a lot of people say 20 minutes is fine and some do shorter than that. I like to take slightly more time doing everything, just so it's as relaxed and comfortable as possible. Sometimes if I feel very uncomfortable lying on my side, rolling over onto my back helps, but I believe the enema has to have been in at least a little while or it'll just come out. I think the earliest I've personally rolled over is 10 minutes, I try to do 30 so I'm sure it has the best chance of staying in. Movement will probably not help you keep it in, but experiment with it, I've found sometimes the only thing that's relieved the uncomfortable feeling is walking around, but then I don't think that's going to be an enema that's going to stay in very long.

And if you expel it quickly, you can always do another one, after a clear out you may be able to keep it in a lot longer / all night.

Of course, when you're not flaring these things are much easier, but we often need to use these things when we're least likely to find it comfortable and retain it! Good luck with it though.

Thank you very much Quincy!

I went through a violent bout of pain and blood today genuinely thought i was going to keel over at one point.

managed to pass a stool that was obstructing me and then tried the suppository. It went in fairly easy but i wasn't sure how far to push it (not exactly easy to get the thing right up there). I clenched as well as i could and managed to keep it in for 5-10 minutes before having to go to the loo again.

This evening ill move on to the enema and try my best to keep that down with your sound advice.

I shall let you know how i progress, hopefully i dont have another day like today, it truly was a frightening experience to say the least.

Quincy have you ever damaged the anus by knocking the enema or hitting it up in the wrong place? Just wondering. I'm slowly improving at the administering of them btw, I'm a newbie and I'm slowly getting there with the darn (lovely) things.

If your symptoms have worsened while taking oral prednisone perhaps you have a gut infection. Have you been tested for that? Steroids don't help infections.

If you do not have a gut bug then using a steroid enema (not Salofalk) might help your rectal inflammation more than Salofalk enemas and supps. You can't use these long term but short term is useful to stop the symptoms then switch back over to Salofalk.

I started using hypnotherapy relaxation audio recordings for other reasons and serendipitously found that they help with enema retention,. E,g., right after using the enema, lie down and listen to the recording. It takes your mind off how your gut is feeling and often induces sleep.

Hi...no damage from the enemas...I do lubricate the nozzle. If you angle it towards the frontmof your body while slowly pushing it in...that can help.

You could try admministering half a bottle at a time.

I totally agree with ima....get rechecked for a gut bug, and insist on one even though all was OK with the last one. She brings forth a very important point.

What med are you using to help with spasming?

q

Im lucky my GI is incredibly diligent and we have a good relationship so im sure if i requested anything he would oblige. Although im not experiencing any c-diff symptoms, plus my tests revealed lower inflammatory markers. Its just a severe bout of proctitis, i dont really have D so to speak, more blood than anything and when i do pass something solid it comes out fairly normal. Im also not anaemic which is great considering the situation.

Steroids have failed me in the past so i may just have some form of immunity to them perhaps? Or maybe they are yet to fully take hold?

To describe my symptoms right now my toilet trips have cut down from every half hour to maybe once every 3 hours. Mostly blood and mucus if not only blood. Passing a solid stool is very painful (taking buscopan for spasms has helped movements though). Theres almost a bubble feeling in the bottom of my stomach, pretty much causing constant discomfort (but again the buscopan has made a world of difference).

I made progress today, tomorrow i will begin splitting the enemas in half to make it easier, the doses are pretty large for a one shotter.

Will post progress as per.

Thanks to all who have left advise, its all been very useful, im truly grateful.

So I was admitted two days ago and am getting cortisone steroids through IV. I'll be doing this for 5 days in total, at which point I'll be starting infliximab for the year.

Now I was pretty shocked about this, I wasn't aware the drug was available on the NHS. My specialist said that it was recently approved this year so I suppose I'm lucky?

I've never experienced a biologic, so if anyone could explain the benefits in comparison to such drugs as azathioprine I'd be interested to know. It seemed my GI has high hopes for the drug.

My main concern at the moment is just trying to get some sleep. 6 days without a wink now, being in a cruddy nhs hospital sharing a toilet with 6 others who are incredibly noisy does not help the cause. (Understandably everyone is suffering so I sympathise, but these are overnight cases and I'm here for a week!). Is something like tramadol an option before bed? Could I take something stronger to knock me out?

I hate where I am and how I feel at the moment, I'm generally a busy person so I'm freaking out about things that need to be done in the coming weeks, hopefully with your guys wonderful advice I can level my head a little and breeze through this as best as possible.

I'm sure I have other questions but I'm just super spaced out to really think of them.

Thanks in advance!

Noticed from your sig that you are taking turmeric. Don't know if you still are but I'd stop it for now if it was me. Turmeric has blood thinning properties and I find it can contribute to worse bleeding for me.

Biologics were approved for UC last year in the UK. Hope it works out for you.

You are bound to freak out somewhat from the high steroid dosing, but keep telling yourself that this is a temporary situation. It sounds like they intend to keep you in hospital 'til Tuesday. (?) Alas, hospitals + noise in patient rooms is all too common; maybe a relative or friend can bring you a headset to provide a bit of relief. Think about your diet & getting enough calcium, vit D, potassium, iron, etc. in the coming weeks to help restore your strength & avoid overeating due to steroid side effects. Everything else will fall into place when your flare comes under control. I understand that you have plenty of things you'd rather be doing this weekend and empathize; we UCers all go thru this kind of hassle at times. Beaming positive thoughts to you!!!!! / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)

I've scanned through your posts:

First I want to commend you on keeping it together. You seem so calm & level headed. I'm twice your age & am scared as a rabbit by what's going on.
Second, I'm glad your in the hospital getting fluids and care. Lugging the iv around is a pain but there's always a garbage near by;)

I hope you get better & remi works for you. I strongly suspect it will!